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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

Should I go to A&E for Post lumbar puncture headache?

67 replies

Tinkerbellone · 17/09/2023 20:41

DD 15 has lumbar puncture 4 days ago. She's in agony with headache. I've rung the children's ward sat and sun - they've said that it's a common side effect but to bring her in if she's screaming in pain.
On a scale of 1-10 (10 screaming in pain) DD Says she's at a 9.
If I ring 111 I know they will tell me to go to A&E.
...but she can't sit. Only lie down. Pain is unbearable sitting up.
I've explained all this to nurse who relayed to a Dr. They don't seem worried but it awful watching my DD in pain and unable to sit up. She has no temp. Although, some side effects from new medication.

Has anyone had any experience of post-Lumbar Puncture pain?
What would you do?

OP posts:
Hopper123 · 17/09/2023 21:58

I had this for 15 days after my lumbar puncture which I expect was a leak of fluid as they had a student try 3 times on me , each time failing before my mum asked for a consultant to do it for me (I was out of it with the muscle relaxants) it was the worst 15 days of excruciating pain and having to do nothing but lie down. Whenever I spoke to anyone about it they just told me I would need to ride it out it was horrible but did subside. I didn't know anything about blood patches etc so I think if there is a possibility they can do something to help her definitely take her in. It's honestly the most awful kind of headache and feeling. Hope she is feeling better soon. X

somethingsomething1 · 17/09/2023 22:03

my post LP headache lasted 8 days. I called after about 7 and was advised to give it a while longer. However if my DC was in the same amount of pain I'd take them in to be assessed. It's an awful, debilitating pain.

fairymary87 · 17/09/2023 22:18

Hopes she's ok x

Original poster
Tinkerbellone · 17/09/2023 22:19

@teachermummyme She's not got a temperature and no leaking from injection site. She had inter-cranial hypertension & had fluid removed. Thank you for your advice.
Still no call from the ward :(

OP posts:
vipersnest1 · 17/09/2023 22:23

Call the ward back one last time to see if you get an answer. If not, take her to A&E.
It's unfair (I'm not blaming you, but the hospital) to leave her like that.
For pain to cause vomiting, it's extreme and your DD shouldn't have to go through that.

MrsMarzetti · 17/09/2023 22:24

Please just take her in

SisSuffragette · 17/09/2023 22:24

Oh my goodness your poor dd, I had this 2 years ago and it was absolutely horrendous. The only thing that made me better was being on a drip because I couldn't keep any water down or take any medication. Please take her back to a&e.

OldLabMummy · 17/09/2023 22:24

I did OP a few years back. The leak in spinal fluid was a result of a fall though (hospital said I had effectively given myself a lumbar puncture). I think it was the 5th or 6th day before I began to feel better and could stand up long enough to go to the bathroom without vomiting or screaming in pain due to the headache.

I had a few abandoned trips to A&E as triage wouldn’t accommodate my need to lie down, or let my husband wait for me to be called while I lay in the car outside. I physically could not sit in A&E. I was eventually admitted to hospital on the 4th or 5th night (after going to A&E and lying on the floor crying). I started to improve by myself on the 5th or 6th day and I was released without treatment. I recovered pretty quickly after this (within 24 hours).

The doctor advised me to drink lots of water and consume lots of caffeine. Hopefully tomorrow will bring some relief for your daughter.

teachermummyme · 17/09/2023 22:50

That's good she hasn't got a temperature or any leaking. I'd definitely take her in though still if she doesn't turn a corner very soon. They may be able to give her intravenous pain relief (the pain from these headaches is really hard to describe how awful it is) and anti-emetics if she feels nauseous again. Good luck.

NutellaNut · 17/09/2023 23:00

Go to A&E now!!!

I had a spinal tap (spine leaking fluid) after a lumber puncture. I was screaming in agony and vomiting. I was blue lighted to hospital in the end. The fix was a blood patch - small amount of my own blood injected into the hole - which sorted it pretty quickly. I was also put on a drip to replace fluids. It was the worst pain I’ve ever had. (Childbirth was infinitely less painful) Please get her sorted out asap, before it gets any worse.

newyorky09 · 17/09/2023 23:00

I had this after a lumbar puncture and the headache when I stood or sat up was the worst pain I’ve ever experienced. After about 5 days of it not shifting my dad suggested I try to lie as still as absolutely possible for as long as possible to let the lumbar puncture wound heal. I did this for about 12 hours and it shifted. It did mean I cut down on the fluids during this time so I didn’t need the toilet. I just thought I’d let you know as it seemed to work. As others have said they can also do a blood patch and with her being a child definitely best to go back and get it checked.

Original poster
Tinkerbellone · 17/09/2023 23:03

Hi. Thank you for the replies. A doctor has just called me from Paeds ward.
Nothing they can do- she said, head ache and vomiting are side effects. I explained it was severe headache and getting worse and she could hardly move. TBH she didn't seem to care. Said if she came in my DD would only get basic pain relief that I'm giving at home.
(Ibruphen & paracetamol). She said to take my DD to A&E if I was concerned. Wouldn't let her readmit to the ward. Said 'headache' would last a week.

I don't know what I can do. We are both tired. She can't sit in A&E she's in too much pain. Dr had never heard of a blood patch either.
I feel so frustrated.

OP posts:
EggTheParrot · 17/09/2023 23:06

Tinkerbellone · 17/09/2023 23:03

Hi. Thank you for the replies. A doctor has just called me from Paeds ward.
Nothing they can do- she said, head ache and vomiting are side effects. I explained it was severe headache and getting worse and she could hardly move. TBH she didn't seem to care. Said if she came in my DD would only get basic pain relief that I'm giving at home.
(Ibruphen & paracetamol). She said to take my DD to A&E if I was concerned. Wouldn't let her readmit to the ward. Said 'headache' would last a week.

I don't know what I can do. We are both tired. She can't sit in A&E she's in too much pain. Dr had never heard of a blood patch either.
I feel so frustrated.

You need to take her to a&e as it's 4 days post lumbar puncture you can't go via the ward as in most cases it's only 24hours open access. They can do a blood patch but maybe take her to a childrens hospital if you have one nearby? That way there is more than 1 paediatrician?

therealcookiemonster · 17/09/2023 23:08

@Tinkerbellone sorry but that Dr is talking bullocks. she clearly doesn't know the treatment for post LP headache. there are other pain relief options and caffeine tablets really help. please take her to A&E and hopefully a more senior doc will see her. if still no luck at A&e ask them to speak to the anaesthetic reg or consultant oncall. we regularly do blood patches although not sure if 15 year old would be offered one as I only work with adults.

therealcookiemonster · 17/09/2023 23:10

but just to say that if you go tonight you are unlikely to see anaesthetic reg and they won't do it till tomorrow anyway. I would reccommend going early morn tomorrow like 7am because a&e is quiet during that time. Try to take her to a big teaching hospital rather than small local hosp if possible

Original poster
Tinkerbellone · 17/09/2023 23:11

She managed to go to sleep now. Thank goodness. I will take her to A&E in the morning or early hours if she wakes up in agony again. Thank you SO much for all the advice. I don't feel so alone xx

OP posts:
Oopsididitagaintomorrow · 17/09/2023 23:20

I@Tinkerbellone I would take her in. I had this after my c-section and it was horrendous x100. I ended up having a blood patch done and the relief was almost instant. Had to stay in over night as blood pressure was through the roof - but absolutely fine following day.

Please take her to A&E x

CrazyCatLover · 17/09/2023 23:21

Sounds like you have spoken to a very junior doctor.
I'd take her in and ask to be seen by the registrar if you still aren't getting anywhere.

CrazyCatLover · 17/09/2023 23:31

Sorry didn't see that she is asleep now. That's good news, but definitely take her in if her symptoms persist in the morning x

agonyagony · 18/09/2023 08:30

How is she doing today @Tinkerbellone ?

I was horrified to hear from a fellow migraine sufferer upthread that this pain is worse than the pain of migraine. I hope that your DD is doing better now but if not please don’t hesitate to make a fuss on her behalf and get her some help. So often we are told we’re overprotective mothers and so forth but if it’s worse than migraine pain it must be unbearable. No one should be expected to “put up with” that.

I hope you’re feeling better too as it must be awful seeing your DD suffering so much with all of this. 💐

Alargeoneplease89 · 18/09/2023 08:34

Hope your DD is OK and managed to get some sleep

Littlegoth · 18/09/2023 08:39

I would take her to A&E if lying down doesn’t stop the pain. I had a spontaneous spinal fluid leak and it was hell. Lying down should stop the pain , or drastically improve it, but I wouldn’t necessarily wait for it to improve without a blood patch - mine was picked up too late as I was misdiagnosed (no one’s fault, I literally woke up with it so it didn’t occur to anyone) and healing was long and arduous. A&E are unlikely to do a blood patch - you might be better ringing your GP this morning and seeing if they can arrange admission with the hospital x

Worldgonecrazy · 18/09/2023 08:46

I had this after a small nick to my spinal cord during a routine operation. It was horrendous. I had been told to go straight back to the hospital if it happened, was put on grips then a blood patch to fix. I can’t believe that anyone would let someone suffer when there is an easy fix. I e never had a headache like it, definitely worse than childbirth, sciatica or migraines! (From personal experience). Keep her as horizontal as you can, preferably at a slight angle towards the head and definitely take her to a larger hospital.

Calistano · 18/09/2023 08:56

What an incompetent arse you spoke to. I despair honestly, at least the poor girl should get some decent painkillers.

Veganmedic · 18/09/2023 08:58

Tinkerbellone · 17/09/2023 23:11

She managed to go to sleep now. Thank goodness. I will take her to A&E in the morning or early hours if she wakes up in agony again. Thank you SO much for all the advice. I don't feel so alone xx

What lazy advice from the ward. Anaesthetist here-lots of features for a dural puncture headache. We often treat conservatively for 48 hours (fluids, simple painkillers, weak evidence for caffeine so often suggest drinking coffee for adults) but after that or jf debilitating we'd be talking about a blood patch. I'd go to A&E and when you're seen talk to someone about an anaesthetic review for a patch as it's us that do them not the paediatrician. Don't worry if you didn't take her in overnight-it's not typically a procedure that's done out of hours as you need two anaesthetists to do it usually

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